First of all, thank you for reading this. I have been reading all your posts and in my darkest moments they have given me the strength to push on.

My name is Gregory, I'm 33 years old and I suspect I have BVL. I have 40% left in my left ear but the right ear is a bit of a mystery since I had a tympanoplasty has a kid.

It all started after a bad cold and mini barotrauma 5 weeks ago where I damaged my good ear. I'm waiting on the rotational test to confirm the extent of the damage on both side but in the meantime I'm experiencing a lot of symptoms you mentioned particularly the visual ones (oscillopsia which I can't really cope with at the moment, blurry vision...).

On top of it I'm experiencing sensitivity to light, colours are brighter than they should be, reduced depth of field perception and increased night blindness.

Just wondering if you have experienced these at some stage and if it gets better?

First of all, thank you for reading this. I have been reading all your posts and in my darkest moments they have given me the strength to push on.

My name is Gregory, I'm 33 years old and I suspect I have BVL. I have 40% left in my left ear but the right ear is a bit of a mystery since I had a tympanoplasty has a kid.

It all started after a bad cold and mini barotrauma 5 weeks ago where I damaged my good ear. I'm waiting on the rotational test to confirm the extent of the damage on both side but in the meantime I'm experiencing a lot of symptoms you mentioned particularly the visual ones (oscillopsia which I can't really cope with at the moment, blurry vision...).

On top of it I'm experiencing sensitivity to light, colours are brighter than they should be, reduced depth of field perception and increased night blindness.

Just wondering if you have experienced these at some stage and if it gets better?

Thanks!

Gregory

Hi Gregory

Sorry to hear you are having a ruff time Greg. You might have BVL but please wait for your test results to be sure.
Anyway, getting back to your oscillopsia, sensitivity to light and night blindness etc. Yes..I have experienced all of what you mention.
I know how you feel, these new sensations are far from pleasant and at times can really bring you down emotionally.
Your inner ears really play a role more important than most people (except us) really know. Once they start to malfunction or cease to work your brain gets pretty stressed out because it does not know how to handle the lack of accurate messages the inner ears used to send to it.
It takes time for your brain to adapt to this new reality. Everyone is different so the adaptation process will vary from person to person.
So down to the nitty gritty...yes...you will get better and the unpleasant sensations you are experiencing will diminish substantially over time. I can tell you that although I am aware that I am not perfectly normal as far as balance goes, I am back to leading a normal life with what I consider to be easy to live with limitations. I only occasionally experience minor oscillopsia and the other odd sensations you mentioned have pretty much disappeared altogether.
Have you started any rehab exercises yet with a physio therapist?

So sorry for late reaction, was not notified about this post!
I was wondering in what way do you think it is better to have 30% left (if it stabilizes, because I dont think that is the case with me..) than zero function? I get to hear so many different opinions about it, that I am kind of lost...

I just hear that once you get zero function, you no longer get the vertigo episodes and at the moment, those are some of the worst symptoms I get... And I also get severe oscillopsia..so I was wondering what would be the main difference if I had zero function in both ears?

In any case, my ENT wants me to do an MRI scan now, to check for possible "vertigo epilepsy"..? He just does not understand these vertigo episodes, although from what I have read from other people, they do seem to indicate further vestibular loss..

Again, thank you so much for all the information you are so kind to share

Quote:

Originally Posted by manybikes

Hi DizzyM

Your Doctors are probably right. Dealing with no vestibular function is very very difficult. If your one side stabilizes, that remaining 30% can make the world of difference in your life. Despite being able to adapt to my present condition I would still love to have some remaining function.
My experience with the vertigo attacks were fairly short lived. I only suffered with them for less than a year. They would come and go but only lasted for seconds, because they would come at random with no warning there was really no way to cope other than wait it out. It is a condition that can have some mental impact on you, I understand how you feel. I suffered somewhat from anxiety during this time.
Manybikes

I have just read your message, and although Manybikes is definitely the right person to give you really good advice, I thought I would also give you my support and to let you know that I am also going through a process of adaptation...

I have been suffering from BVL for almost 13 years, but I have actually had "normal years" in between, with no complaints. Only 2 and a half years ago I got worse and have not been able to compensate fully yet. From all the test I have been doing, I have been losing more and more function on both sides (last ones showed zero function on my left side and 30% on the left side), so as my situation is not stable yet, the compensation is more complicated.

So, it is like Manybikes said, we all have different paths and recovery processes, but in time hopefully you can find some relief.

Have you done the tests to find out the situation of your right ear?

Anyway, hopefully you can find some answers and start feeling better soon.

If you have any questions regarding my story, complaints, feel free to ask!

Quote:

Originally Posted by greggaway

Hi Manybikes,

First of all, thank you for reading this. I have been reading all your posts and in my darkest moments they have given me the strength to push on.

My name is Gregory, I'm 33 years old and I suspect I have BVL. I have 40% left in my left ear but the right ear is a bit of a mystery since I had a tympanoplasty has a kid.

It all started after a bad cold and mini barotrauma 5 weeks ago where I damaged my good ear. I'm waiting on the rotational test to confirm the extent of the damage on both side but in the meantime I'm experiencing a lot of symptoms you mentioned particularly the visual ones (oscillopsia which I can't really cope with at the moment, blurry vision...).

On top of it I'm experiencing sensitivity to light, colours are brighter than they should be, reduced depth of field perception and increased night blindness.

Just wondering if you have experienced these at some stage and if it gets better?

From my experience, I could not live with vertigo that could strike at anytime or anyplace, I find as I move through this, life without any inner ear function is better than violent vertigo. I feel more in control of my own destiny.

I have not been dizzy since I lost all function, disequilibrium yes, which is improving but not vertigo or never ending dizziness. Of you loose all inner ear function I do not think you can get dizzy, which helps when it comes to riding roller coasters and on a boat, you do not get dizzy or seasick!

Thanks for your post. And yes, that was what I had previously understood - that it was better to have no inner ear function than having one ear that works, but badly.. So I do wonder why all my doctors and Manybikes believe it is better to have some function left.. I cannot stand the vertigo episodes out of nowhere, the constant dizziness...
so glad you are getting better and better each day

Quote:

Originally Posted by uga

From my experience, I could not live with vertigo that could strike at anytime or anyplace, I find as I move through this, life without any inner ear function is better than violent vertigo. I feel more in control of my own destiny.

I have not been dizzy since I lost all function, disequilibrium yes, which is improving but not vertigo or never ending dizziness. Of you loose all inner ear function I do not think you can get dizzy, which helps when it comes to riding roller coasters and on a boat, you do not get dizzy or seasick!

Good to hear from you!
I wish I could give you and Greg sound advice on whether or not you should retain your remaining function...but I can't.
In my case my history goes back a long time..or so I think. About 30 years ago I contracted Meningitis and shortly thereafter went through a period where I would get the odd shot of vertigo. Back then I was told "it's all in your mind"..yeh right!! I have no idea if I sustained serious inner ear damage from that episode...the Doctors now say it is very possible.
Fast forward 20 years..I start to get the same episodes of short but violent vertigo. These episodes only last less than a year before they stop..they then tell me I am BVL..yikes! This is when the oscillopsia and other fun stuff started to happen.
Now, I did have one Doctor tell me that it is possible that I may have lost a great deal of my function when I had Meningitis but was able to adapt and function very normal for the next 20 years (sound familiar Dizzy?)
Then..who knows what happened that caused the remaining function to...malfunction... and rapidly decline to zero.
This is all speculation guys..the Doctors simply state my loss is "idiopathic" meaning...they simply don't know the cause.
I fully understand what you are both going through. When I still had function but it was malfunctioning, I had absolutely no control over the vertigo, and that is not something that you can adapt to. Please always keep this in mind when I talk about the things I can do now...I no longer get hit with vicious vertigo attacks which makes a difference safety wise (our conditions are a bit different right now)
Having no function is no picnic either, everyone is so different. I have read many stories from others who have not been able to adapt to BVL as well as I have and are having a real hard time with it.
When I say "I wish I had at least some function" I am assuming that because I adapted so well to no function..that even a bit of function would make me even better, this may not be a proper conclusion.
I do not consider myself to be an exceptional individual so I have always felt that "if I can do it, anybody can"..I simply refuse to give in or give up. I wanted more than anything to get my old life back and for the most part I have. Keep in mind that this process can be frustrating and slow. I still constantly strive to improve.

You can only trust in your Doctor for now and see if you can stabilize with the function you have. Keep me posted on your progress.
I hope this helps Dizzy and Greg...anytime you guys need to ask a question or need a little moral support I will be glad to help in anyway I can.

Thanks again for your message. Interesting that we had somewhat similar paths, with the vestibular loss and no symptoms for periods of time..My BVL is also idiopathic, so no idea what started it all, what made it stable for years and what made it worse recently...all I know is that it seems still very unstable as I keep on getting the scary vertigo episodes from time to time.

I understand now what you meant by saying it be better to have some function left than none - I think that as long as it is stable, it might indeed be much easier to adapt. I have also read about some people who have it really hard when losing all the function, ending up using a cane or wheelchairs to move around and that is certainly worse...

I do think often about your example as a motivation - I am also very "stubborn" and just refuse to give up. I am keeping myself as active as I can, also using the Brain Port device and just hoping this stabilizes sooner than later (as I think it is the main problem with me now).

So thank you again Manybikes, will keep you posted on how it goes

Quote:

Originally Posted by manybikes

Hi Dizzy

Good to hear from you!
I wish I could give you and Greg sound advice on whether or not you should retain your remaining function...but I can't.
In my case my history goes back a long time..or so I think. About 30 years ago I contracted Meningitis and shortly thereafter went through a period where I would get the odd shot of vertigo. Back then I was told "it's all in your mind"..yeh right!! I have no idea if I sustained serious inner ear damage from that episode...the Doctors now say it is very possible.
Fast forward 20 years..I start to get the same episodes of short but violent vertigo. These episodes only last less than a year before they stop..they then tell me I am BVL..yikes! This is when the oscillopsia and other fun stuff started to happen.
Now, I did have one Doctor tell me that it is possible that I may have lost a great deal of my function when I had Meningitis but was able to adapt and function very normal for the next 20 years (sound familiar Dizzy?)
Then..who knows what happened that caused the remaining function to...malfunction... and rapidly decline to zero.
This is all speculation guys..the Doctors simply state my loss is "idiopathic" meaning...they simply don't know the cause.
I fully understand what you are both going through. When I still had function but it was malfunctioning, I had absolutely no control over the vertigo, and that is not something that you can adapt to. Please always keep this in mind when I talk about the things I can do now...I no longer get hit with vicious vertigo attacks which makes a difference safety wise (our conditions are a bit different right now)
Having no function is no picnic either, everyone is so different. I have read many stories from others who have not been able to adapt to BVL as well as I have and are having a real hard time with it.
When I say "I wish I had at least some function" I am assuming that because I adapted so well to no function..that even a bit of function would make me even better, this may not be a proper conclusion.
I do not consider myself to be an exceptional individual so I have always felt that "if I can do it, anybody can"..I simply refuse to give in or give up. I wanted more than anything to get my old life back and for the most part I have. Keep in mind that this process can be frustrating and slow. I still constantly strive to improve.

You can only trust in your Doctor for now and see if you can stabilize with the function you have. Keep me posted on your progress.
I hope this helps Dizzy and Greg...anytime you guys need to ask a question or need a little moral support I will be glad to help in anyway I can.

I have just read your message, and although Manybikes is definitely the right person to give you really good advice, I thought I would also give you my support and to let you know that I am also going through a process of adaptation...

I have been suffering from BVL for almost 13 years, but I have actually had "normal years" in between, with no complaints. Only 2 and a half years ago I got worse and have not been able to compensate fully yet. From all the test I have been doing, I have been losing more and more function on both sides (last ones showed zero function on my left side and 30% on the left side), so as my situation is not stable yet, the compensation is more complicated.

So, it is like Manybikes said, we all have different paths and recovery processes, but in time hopefully you can find some relief.

Have you done the tests to find out the situation of your right ear?

Anyway, hopefully you can find some answers and start feeling better soon.

If you have any questions regarding my story, complaints, feel free to ask!

Hi Dizzy,

Thank you for your message!

I'm still on a quest to find the extent of the damage on both side. I should know in a month or so. In the meantime, I'm still trying to find a VRT therapist in Sydney so that I can get started with a formal course but no luck so far.

In your earlier post, you mentioned optokinetic stimulation and said it helped you a lot. What type of exercises are they? Can this be done at home?

Your latest test results should show what is happening with your vestibular system. In my case, I had suffered for quite some time before they gave me that test. At the time I had no idea what the test was about and when I had no reaction to the different water temps I was real proud because I thought that meant that I was normal!!...wow..was I wrong.
Even after that my Doctor really didn't tell me how serious this all was. They sent me to a physio therapist after that. I remember telling the physio that I hope my function returns soon as I was suffering considerably with the effects..the physio gave me a puzzled look and said "you will never get your function back, didn't they tell you that?" I was stunned! Like you I went home that day absolutely terrified, I cannot describe how crushed and scared I was.
There is light at the end of the tunnel Greg, it takes time and some hard work but you will improve and life will get good again.
But let's not jump the gun here....let's see what your test results are.

Hi Manybikes,

I hope you are doing well today.

I have been back at work for over a week now and it's really tough. The strange, kind of 2D vision and all other vision related symptoms are sometimes too much to handle. But I remember what you said about pushing yourself - inactivity is our worst enemy.

I drove about 15km this afternoon (a mix of city streets and highway) and was ok except for the weird depth of field (objects appears closer than they are!) - I really that this goes away eventually.

I wanted to ask you a couple of questions...

Did you have trouble sleeping in the beginning? I find that I constantly wake up if there is the slightest noise. It feels like I'm on high alert all the time. I guess my girlfriend can sleep easy knowing I'll be up in no time should we get broken into

How do you cope with fluorescent lighting? Does it get better eventually?

If you don't mind me asking, what type of work do you do with such balance, dizzy, and eyesight problems?

It was my experience with no vestibular function that if I had a walking stick or cane it was a tremendous help in the beginning. It was just another reference point telling my brain I am upright and stable while I adapted.

Greg, put your safety first, if you need a mobility chair in the beginning use one, I often used one in the shopping malls and busy places until my oscillopsia settled down and it became easier. To help with the vision I also played a lot if ping pong!

It does get better----always put safety first! Push yourself just don't push yourself over the edge. Progress is measured in months and years not days or even weeks in some instances. Always remember that and it is not a straight line up it is two steps forward one step back. Even when you are sleepin your brain is adapting.

If you don't mind me asking, what type of work do you do with such balance, dizzy, and eyesight problems?

It was my experience with no vestibular function that if I had a walking stick or cane it was a tremendous help in the beginning. It was just another reference point telling my brain I am upright and stable while I adapted.

Greg, put your safety first, if you need a mobility chair in the beginning use one, I often used one in the shopping malls and busy places until my oscillopsia settled down and it became easier. To help with the vision I also played a lot if ping pong!

It does get better----always put safety first! Push yourself just don't push yourself over the edge. Progress is measured in months and years not days or even weeks in some instances. Always remember that and it is not a straight line up it is two steps forward one step back. Even when you are sleepin your brain is adapting.

If you don't mind me asking, what type of work do you do with such balance, dizzy, and eyesight problems?

It was my experience with no vestibular function that if I had a walking stick or cane it was a tremendous help in the beginning. It was just another reference point telling my brain I am upright and stable while I adapted.

Greg, put your safety first, if you need a mobility chair in the beginning use one, I often used one in the shopping malls and busy places until my oscillopsia settled down and it became easier. To help with the vision I also played a lot if ping pong!

It does get better----always put safety first! Push yourself just don't push yourself over the edge. Progress is measured in months and years not days or even weeks in some instances. Always remember that and it is not a straight line up it is two steps forward one step back. Even when you are sleepin your brain is adapting.

Be patient and be easy with yourself!

Well put Uga!
Greg: Yes, I did suffer from the 2D vision thing...sometimes if I saw shadows on the road I could not tell if they were holes or shadows!

Sleepless, yes, I contributed that more to anxiety than anything else, after all, you are dealing with a very stressful situation.
I sleep very well now and my vision is normal.

Being active is probably as good a therapy to help you adjust as anything else.
Uga is giving very good advice...keep active but keep safe!
Don't push the driving too much. If you are unsure of yourself always have someone with you to help if you get overwhelmed.